The prospect of a multi-million-pound care and compensation package from the Government was greeted with scepticism by the families of victims of the human form of BSE.

While support groups have lobbied for two years for the provision of adequate care to sufferers, many families felt that an admission of responsibility from the Government was long overdue .

Anne McVey lost her daughter Claire, 15, to variant Creutzfeldt-Jakob disease. She died in January at home where she was cared for during a lengthy illness by her mother, a former nurse. She was the youngest victim of the disease, which has claimed 73 lives since 1995. A further 11 people are believed to have the disease.

Mrs McVey, 41 of Barnstaple, Devon, said she did not believe promises by the Government because of its conduct throughout the BSE crisis. "I won't believe it all until I see it. Of course I am sceptical of the Government's promises. I'm still in a total state of paranoia and won't accept it until it happens. Nothing can compensate us for losing Claire and nothing can compensate Claire for losing her life."

The provision of care was fundamental in dealing with the growing number of victims of the disease, said Mrs McVey, who gave up her job to look after her daughter. She said: "We need to have a centralised care package . This is a man-made, rapidly spreading illness. I wanted to look after Claire myself. For me it was not so bad as I am a nurse. But for other families it can be a nightmare. If you do not know or understand the system, it is horrific."

"We were told that there was no specialist wheelchair available for Claire. I spent many precious hours away from her trying to organise things for her. It was a huge, 24-hour job and I have still not been back to work." Although she was cautious in welcoming the compensation and care package, she was relieved at not having to pursue legal action against the Government.

She said: "If we had taken action ourselves, it would have been horrendous. I don't think I would have survived it. The worst thing is that I know that someone is to blame and could have stopped this . As well as dealing with the death of my daughter, I have this major anger against the system . Claire is priceless . I have been through a lot in my life but losing Claire absolutely killed me. It is devastating to watch your child die."

Malcolm Tibbert, 33, who lost his wife Margaret to vCJD in January 1996, eight months after she was diagnosed, said that each individual case for compensation would be different. Last year Mr Tibbert issued a High Court writ against the Ministry of Agriculture, Fisheries and Food and the Department of Health, accusing them of negligence and breach of their statutory duties . He said: "First and foremost the inquiry is about people being accountable and the Government taking responsibility for its actions."

Mr Tibbert, a council administrator, of Eaglesham, near Glasgow, was left to care for his son Daniel, now nine, when Margaret died at the age of 29. He said: "I am a single parent and have to endure all the problems that go with that. Gaining compensation is not just about the expense of child care, it's also about Daniel's life, which has been changed tremendously."

It came as no surprise to Mr Tibbert that leaked drafts of the report included sharp criticism of Cabinet members. He said: "We knew from the inquiry transcripts that there would be criticism but it will be how it is worded that is important. It's the end of a chapter rather than the end of the story. I have lost someone I expected to spend the rest of my life with; our family has been changed irreversibly."

He said: "It is an opportunity for the Government to announce a centrally-funded care policy so that families who have relatives with the disease do not have to go through the same things I did just to find appropriate care."

David Body, the lawyer acting on behalf of the families, reserved judgment on the prospect of compensation until he knew that "the rumours" of a care package had been confirmed. He described care for vCJD victims "as something of a postcode lottery". A centrally funded and managed care package would prevent this happening.

23 Oct 00 - CJD - Compensation deal agreed for CJD

By Valerie Elliott, Consumer Editor

Times ... Monday 23 October 2000

Senior ministers have agreed a "no fault" compensation scheme to be paid to families of human BSE victims despite fears that the floodgates could open to hundreds of new compensation claims against the Government.

The ministers are also to announce a new central fund to provide care for future victims of the disease and ensure uniformity of treatment across the country.

Alan Milburn, the Health Secretary, is also to study the case for a similar care package to be offered to other victims of degenerative conditions such as motor neurone disease.

Ministers are shaken by criticism from Lord Phillips in his report on the BSE crisis about the often poor standards of care offered to the families of victims.

An ad hoc Cabinet committee chaired by Margaret Beckett, Leader of the Commons, overruled the wishes of senior civil servants and decided it was "morally right" for ministers to offer a compensation scheme to the families of victims of the fatal brain illness, variant Creutzfeldt-Jakob disease. The political decision was unanimous and agreed by Mr Milburn, Nick Brown, the Agricultural Minister, Andrew Smith, Treasury Chief Secretary and Jack Straw, the Home Secretary, at a meeting last Thursday. Tony Blair is to approve the decision this week but full details of the ex-gratia payment scheme are to be worked out in consultation with lawyers acting for the victims and their families.

David Body, the solicitor for the legal firm Irwin Mitchell, who is acting for many families, said last night that he had not been approached to discuss such a scheme but he was ready to put forward a possible basis. He has long hoped that ministers would offer such a package to avoid lengthy haggling in the courts that would cause further distress to families.

23 Oct 00 - CJD - 'Cash no consolation for CJD calamity'

By Elizabeth Judge

Times ... Monday 23 October 2000

Roger Tomkins watched helplessly as his vivacious daughter Clare slowly deteriorated from the fatal brain illness Creutzfeldt-Jakob disease. She was 24 when she died in 1998.

He said last night that no money could compensate for his daughter's death. "To me, compensation is not about figures, it is about accepting responsibility for what has happened and this does seem to be the authorities saying we are sorry," he said. "That is all the compensation we require.

"I am delighted that the Government has taken this view, but no amount of money brings loved ones back."

Clare's family noticed that she was ill in 1996 when she returned from a holiday in Norfolk. Her weight dropped and she became increasingly depressed. Her memory faded and despite anti-depressant drugs her condition worsened. Her mother, Dawn, agreed to have her sectioned under the Mental Health Act.

Finally in August 1997 after a biopsy of her tonsils doctors confirmed that she had variant CJD (vCJD), for which there was no cure. The case was particularly poignant because Clare had become a vegetarian when she was 13 because of her love of animals.

Mr Tomkins gave evidence to the public inquiry into BSE in 1998. His account of the 18 months of "hell " endured by his daughter left officials and relatives of other victims in tears. He described how Clare was reduced to an emaciated wreck who howled like an injured animal and cowered in fear of her own family.

He blames his wife's death shortly afterwards from ovarian cancer on the strain and anguish of watching their daughter die. Mr Tomkins, who has moved to Horning, Norfolk, said: "What we welcome is that Mr Blair is saying there is a moral issue here - that people have lost their lives through the actions of the previous Government."

Like relatives of many of the other 77 victims of vCJD he feels he is still owed an apology from those responsible . "This Government is accepting the responsibility of the previous Government and Civil Service," he said. "It would be welcome if those individuals responsible were seen to stand up and be counted too."

Mr Tomkins believes that the evidence that surfaced at the inquiry was enough to proceed with criminal action, but if the no-fault compensation package did materialise then that would not be necessary.

Dot Churchill, whose son Stephen, 19, became the first confirmed vCJD victim in 1995, said she and her husband were regarded as "cranks" when they demanded compensation and an inquiry. "If the reports of the findings are correct we have been vindicated," she said.

23 Oct 00 - CJD - Ministers ready to compensate CJD families

James Meikle and Nicholas Watt

Guardian ... Monday 23 October 2000

Ministers will this week admit for the first time a government obligation to compensate families whose lives have been devastated by the human form of BSE.

A trust to administer "no fault" payments to relatives of the victims - 84 so far - is expected to be announced on Thursday, while a nationally-funded care package to help patients in the desperate last few months of their lives is also under consideration.

The cost could run into millions of pounds, but Tony Blair has accepted the government has a moral responsibility to the victims of variant CJD, linked for the past four years to BSE, the cattle disease that has already cost British and EU taxpayers £3.5bn in compensation and subsidies to farmers and the meat industry.

In addition, health secretary Alan Milburn will announce plans to "fast track" diagnosis following complaints at the length of time it takes for cases to be referred from GPs to consultants and the CJD surveillance unit at Edinburgh. This should allow medical and social services to swing into action more quickly.

Victims' families are preparing to launch court cases following this Thursday's publication of the long-awaited report of the inquiry into the BSE disaster, but ministers hope their gesture will limit political fall-out hitting the present administration. The Treasury had previously been reluctant to support compensation because of the precedent it might set for liability. The Major government refused to countenance any compensation when it learned of a probable link between vCJD and BSE in March 1996.

Estimates of the final death toll from the incurable condition that can take decades to develop range from the low hundreds to 136,000 , but the number of cases has accelerated in recent months.

A health department source said: "There is a sense among families that not enough is being done for them . We want to make sure that families get the support.''

Another government source said: "The government believes that if we can compensate farmers for cattle, then we should compensate these people. There is a moral obligation because something went wrong in government."

David Body, the lawyer representing most vCJD families, said: "A care package is what our clients and ourselves have lobbied for during the past two years so the families of future victims receive better care than experienced by victims and families in the past . Previously families whose loved ones have contracted vCJD have received often poor and inconsistent standards of care . It has been something of a postcode lottery because of a lack of central funds."

Mr Body has estimated a central care package might cost nearly £50,000 per victim on average. The Department of Health believes that so far between £6,000 and £60,000 has been spent by local health authorities and social services on individual patients. The length of care needed between symptoms first becoming evident and death has varied from a few months to more than three years.

The health department recently issued new guidance, from spotting early signs of the disease, which has often at first been mistaken for depression, to funeral arrangements.

Early symptoms include mood swings and problems with balance . Patients fairly rapidly deteriorate , having problems with swallowing and continence before lapsing into coma before death.

Relatives, many of whom have given up work or cut back on hours to nurse relatives at home, have been divided over the extent of compensation but nearly all have been furious that they have never been offered personal apologies for the epidemic that is thought to have killed 78 people and left six others fatally ill.

David Churchill, whose son Stephen was the first known victim in May 1995, has suggested individuals who are criticised in the report covering the first 10 years of the crisis to 1996 should have their pensions stopped as punishment .

The inquiry team, headed by Lord Phillips of Worth Matravers, is expected to criticise both individual ministers and civil servants, and institutional failures within government , for failure to recognise the extent of the risk to humans from BSE and check that measures to combat such an eventuality were policed properly.

The prime suspect for causing the human epidemic is BSE-infected meat , but the use of vaccines made from infected cows is among other possibilities. An 11-year failure even to check those properly was revealed last week when the government had to recall stocks of a polio vaccine because it used bovine material from British herds against the spirit of guidelines dating from 1989.

23 Oct 00 - CJD - Compensation rights

Leader

Guardian ... Monday 23 October 2000

Belatedly, the hardest hit victims in the BSE scandal look as though they might finally receive some compensation for the catastrophic catalogue of errors by ministers and officials . Farmers have received billions of pounds in compensation for the losses that they suffered because of mad cow disease. The meat industry (abattoirs and renderers) have been subsidised to help cover the extra costs of tighter controls. But the hardest hit people - the people who contracted vCJD, the fatal human form of BSE - have still not received a penny . The costs to the families of these victims has been huge: jobs given up, college courses abandoned, family life totally disrupted. Then there is the final loss: 78 out of the 84 people who have developed vCJD after eating BSE infected meat have already died. There could be many more thousands in the pipeline.

Why have they had to wait so long? Anyone familiar with our casino-style civil justice system , will not be surprised. It has a long history of being slow, cumbersome, expensive and ineffective . Road accident victims, for example, have to find someone to blame and insured before receiving their due compensation. Two decades ago, the royal commission on personal injury, discovered that for every £100 paid out in compensation , the lawyers walked away with a further £85 . The 1988 civil justice review found little progress had been achieved and in 1996, in a final report, Lord Woolf noted the system remained "indefensible", frequently paying out more in legal fees than compensation. His reforms have speeded up some procedures but the main faultlines remain.

Now, according to yesterday's Observer, one ministerial response to the report of the BSE inquiry due this week, will be a multi-million pound no-fault compensation programme for the dependents and sufferers of vCJD. Yes please. Just such a scheme was proposed by the royal commission back in 1979. True, at that time it suggested it should be restricted to victims of road accidents. But that was before medical negligence cases had escalated to today's absurd levels. Current compensation cases against the NHS are running at over £2bn. Why slash health spending to meet legal fees? Medical negligence must not be excused, but courts are the wrong place to decide compensation. No fault has worked in Canada, New Zealand and Sweden. Let it be tried with health claims here.

23 Oct 00 - CJD - Public demands answers as an age of inquiries grapples with past failings

Paul Kelso

Guardian ... Monday 23 October 2000

The exhaustive BSE report, out this week, could have been more democratic, say critics

When Lord Phillips of Worth Matravers makes public his 16 volume report on the BSE crisis this Thursday it will mark the end of a process that began three years ago when Tony Blair, fresh to office, ceded to demands for a full public inquiry into the disease and its link with vCJD.

At the inquiry offices in Hercules Road, London, Lord Phillips and his committee have studied more than 3,000 files , received 12,000 items of correspondence , looked at 1,200 witness statements and heard evidence from 333 witnesses at a total cost of £27m .

Time consuming, complex and expensive, it is the model of a public inquiry, eight of which are in session.

Hearings into the Marchioness river boat accident, the Ladbroke Grove and Southall rail crashes and the Bloody Sunday shootings are ongoing. The inquiries into the paediatric cardiac unit at the Bristol royal infirmary and a projected fifth terminal at Heathrow will report in the new year, while the investigation into how Harold Shipman was able to murder so many of his patients will begin once parliament has given approval.

Under the Blair government public inquiries have undergone a renaissance, being convened to investigate avoidable accidents and public health scandals, most of which took place under a Conservative administration reluctant to focus attention on its failings.

But are these investigations a product of political expediency, the last recourse of guilty ministers keen to see uncomfortable questions kicked into the long grass? An expensive and drawn-out way of shutting the stable door after the horse has bolted? Or is the public inquiry a vital democratic tool fulfilling an investigative role on behalf of the public, while providing catharsis and, crucially, answers for families of the bereaved?

Campaign

Maria Shortis has first hand experience of the process. Her daughter Jacinta died in 1986 at the Bristol royal infirmary after being born with five heart defects. She received conflicting advice before an operation, which might have allowed Jacinta to live for a number of years, was bodged . As an NHS manager she recognised a flawed management overseeing a low level of surgical skill . Appalled, she began a three year campaign for an inquiry. "I was outraged by the lack of accountability at Bristol. I had seen incompetence myself but never at a clinical level where lives were being wasted. Parents were told it was the leading paediatric cardiac care unit in the country, yet within the medical profession people said 'don't go anywhere near Bristol'. It was obscene."

The inquiry, chaired by Ian Kennedy, set new standards in openness with daily transcripts appearing on the internet. But Mrs Shortis condemns the length of time it took successive governments to respond.

"We only got an inquiry because I found inside information about the level of incompetence. I introduced journalists to families until the story could not be ignored. Only then did government act," she said. For the families, the process has been constructive, says Mrs Shortis, who founded the Campaign for Dialogue and Clinical Accountability (CDCA), which seeks to promote openness about the risks associated with operations.

Phil Scraton, head of the Centre for Studies in Crime and Social Justice at Edge Hill University College, has studied some of the most emotive public inquiries of recent years, including those into the Strangeways prison riots, Ashworth hospital, Hillsborough, the Bradford fire, Dunblane and the Marchioness.

He is a supporter of public inquiries but proposes wide reforms. "There are problems," Professor Scraton said. "The decision to hold an inquiry, who chairs it, the remit, rules of engagement, selection of civil servants and interested parties can all be shaped by political expediency and opportunism.

"This leads to inconsistency. Why do some disasters get public inquiries when others don't? There is no compulsion to implement report recommendations. It's at this stage that the requirements of government bump into the demands of powerful commercial lobbies."

An example is the Clapham rail inquiry, chaired by Lord Hidden, which recommended in 1989 that automatic train protection be installed on the rail network within five years. This was shelved on the grounds of cost at privatisation in 1994. Relatives of those who died in the Paddington rail crash last year maintain ATP would have prevented the crash.

Critical

Prof Scraton is also critical of the system of charging inquiries to a single person, usually a high court judge, with huge discretionary powers over the disclosure of evidence. He cites the example of Lord Cullen who, while chairing the Dunblane inquiry, ordered that a police report into Thomas Hamilton's firearms history be kept secret for 100 years . Full public scrutiny is crucial, say family groups seeking answers.

The families of Shipman's victims have won a high court action, backed by the Guardian and seven other newspapers, demanding a public inquiry. Alan Milburn, the health secretary, had previously decided to hold the inquiry in private.

Jane Ashton-Hibbert, whose grandmother Hilda Hibbert died while being treated by Shipman, said it was crucial for relatives to hear the evidence. "It's going to be very thorough and it's going to have teeth. If it's out in the open people are more inclined to speak freely," she said.

Louise Christian, a solicitor representing families and survivors of Southall and Ladbroke Grove, said the presence of families at the hearings makes the advocates' jobs easier, and acts as a reminder of why the inquiry was called in the first place. She points out that inquiries can contribute to a change in public expectation and atmosphere.

"Railtrack's contriteness over the Hatfield crash last week would not have occurred had the issues not been raised by inquiries into Southall and Ladbroke Grove," she said.

The central secretariat of the Cabinet Office, which sets guidelines for public inquiries, rejects the charge that expediency affects policy. A spokesman said: "They are never entered into lightly." Prof Scraton would like to see chairmen and women replaced with committees with powers to call any evidence they desire.

Malcolm Tibbert is less interested in democracy than with the truth. His wife, Margaret, died of vCJD in 1996. He is confident Lord Phillips will provide the answers the families want.

"The inquiry helped me get over Margaret's death, but if it raises awareness of the decisions government make with our lives then that will be the most positive thing. The last thing we want to see is more victims."

Under scrutiny

Southall rail crash : On September 19 1997 a Swansea to Paddington express slammed into a freight train at high speed, killing seven people and injuring 160. John Uff's inquiry began in February 1998, was adjourned, and opened again in September 1999. The report was completed on January 31 this year.

Ladbroke Grove rail crash : On October 5 1999 31 people were killed when a Thames train went through a red signal and collided head-on with a high-speed Cheltenham-Paddington train. Lord Cullen's inquiry opened in December 1999. The report is expected next year.

Bloody Sunday : Tony Blair launched the inquiry, in January 1998, into the events of Sunday January 30 1972 that led to the loss of 14 lives in Londonderry, after soldiers opened fire on marchers protesting against internment without trial in Northern Ireland. Chaired by Lord Saville of Newdigate, it is expected to report in two years and cost about £25.5m.

Marchioness formal investigation: On August 20 1989 the dredger Bowbelle collided with the pleasure vessel Marchioness, and 51 people died. The inquiry, ordered by John Prescott in September 1999 and chaired by Lord Justice Clarke, began hearing oral evidence this month.

BSE : The BSE inquiry was announced on December 22 1997. Hearings began in March 1998 and ended in December 1999. Its chairman, Lord Phillips of Worth Matravers, handed the report to ministers on October 2, and the findings will be made public on Thursday. The inquiry cost around £27m.

Harold Shipman : The GP was convicted in January of the murders of 15 patients. In May Lord Laming began hearing private evidence. The inquiry should take up to two years.

Terminal 5 : BAA proposes to build a £1.8bn fifth terminal at Heathrow, enabling the airport to handle 80m passengers a year. The public inquiry started in May 1995. The inquiry inspector, Roy Vandermeer QC, is writing his report on whether the project should go ahead, and a government decision is expected next year.

Bristol royal infirmary : After General Medical Council hearings on allegations against three doctors, two of whom have been struck off and one barred from operations for three years, in October 1997, a public inquiry began in June 1998, conducted by Ian Kennedy. An interim report was published in May; the final one is expected early next year. The inquiry's budget was £10m.

23 Oct 00 - CJD - Former Maff man attacks 'mistaken' BSE report

By Kim Sengupta

Independent ... Monday 23 October 2000

As families of vCJD victims welcomed reports of imminent government compensation, one of the officials likely to be criticised in the report by Lord Phillips of Worth Matravers on the tainted-beef crisis defended his actions yesterday .

Sir Richard Packer , who was permanent secretary at the Ministry of Agriculture, Fisheries and Food from 1993 to 2000, dismissed reports that he would be criticised on two fronts: failing to ensure the order to ban bovine products in feed was rigorously adhered to, and that orders telling abattoirs to strip carcasses of offending material were obeyed.

He said he had been sent draft criticisms relating to contingency planning in March 1996, but he did not accept the criticisms. "I have gone into great detail with the inquiry as to why it's mistaken," he said.

David Body, the lawyer representing the families affected so far by the human form of mad cow disease, reacted positively to reports over the weekend that the Government would announce ex gratia compensation when the Phillips report is published on Thursday. Claims on behalf of the families of those who had died could fall within a range of £75,000 to £250,000, he said.

An even greater priority is securing proper care for those suspected of having the disease, and for future victims. At present, care is provided and funded locally. To ensure consistency of approach and standards, the families' legal team has pushed for a central fund.

The cabinet committee set up to deal with the Phillips report is said to have acknowledged that it would be " morally impossible" to reject claims of compensation and has agreed to a no-fault scheme.

The committee, chaired by the Leader of the Commons, Margaret Beckett, overruled civil servants and was backed by the Health Secretary, Alan Milburn, the Minister of Agriculture, Nick Brown, the Chief Secretary to the Treasury, Andrew Smith, and the Home Secretary, Jack Straw, last Thursday. Mr Milburn is also said to be studying a similar package for victims of other degenerative conditions.

The long-awaited BSE report is expected to be critical of more than 30 former Conservative ministers and senior civil servants over a catalogue of blunders . In what has been described as one of the most scathing indictments of a government department by an official report , it is expected to accuse the ministry of a "culture of secrecy" and a "bunker mentality," according to those who have seen the report.

It predicts that the number of people suffering from variant Creutzfeldt Jakob Disease (vCJD), the human form of bovine spongiform encephalopathy (BSE), will increase to more than 100 next year. So far, 73 people have died from the disease.

Among those facing criticism are former ministers John Gummer , John MacGregor , David Maclean , Gillian Shephard and Douglas Hogg . Also in the firing line, it is believed, are Keith Meldrum , the ministry's chief veterinary officer between 1988 and 1997, and Howard Rees , Mr Meldrum's predecessor from 1980 to 1988. Mr Hogg has blamed the former prime minister John Major .

23 Oct 00 - CJD - 'No amount of money will bring back my Clare'

By Kim Sengupta

Independent ... Monday 23 October 2000

When Roger Tomkins described weeping helplessly as his daughter wasted away to a slow and excruciating death, "eyes full of fear... howling like an injured animal", there was a stunned silence in the packed inquiry room. Then a spontaneous round of applause burst out from those present, many of them in tears.

The Phillips inquiry was one personal landmark in Mr Tomkins' painful journey towards reaching some kind of reconciliation over the death of 24-year-old Clare . Yesterday's news that the Government is at last agreeing to a compensation package for the families of those who died from the human form of mad cow disease (BSE) was another one.

"If this really does happen, it will be an acknowledgement at last that a grave injustice had been done . We have waited a long time for this admission of accountability ," he said.

"The money itself is not important, it will not bring back my Clare or the others who have gone. Nothing will take away the pain, nothing will bring back those we have lost. .." His voice faded away.

Mr Tomkins lost not just his daughter to variant Creutzfeldt Jakob disease, but also, indirectly, his wife, Dawn. She died two months later from ovarian cancer, heartbroken at what had happened to Clare.

As the toll of the dead from vCJD mounted, Clare attracted attention because she had been a vegetarian for 11 years. It was the first ominous sign that the incubation period for the deadly condition was far longer than previously believed .

Clare worked at the pets department of a market centre near her home in Tonbridge, Kent. She had given up meat because of her love of animals and would not, say her friends, knowingly have taken any meat product. The first sign that something was wrong was when her weight began to fall, and she appeared to be suffering from depression. The treatment prescribed comprised anti-depressants and anti-convulsive therapy.

Mr Tomkins, 54, recalled: "Clare was at a psychiatric clinic where they simply could not work out what was wrong with her. When they said they would carry out tests for multiple sclerosis and CJD, I said, 'You can forget CJD for a start, my daughter has been a vegetarian for years'. She would drink milk, but she certainly would not have anything else derived from cattle.

"Then the results came. I remember the doctor saying, 'We shall have to rewrite the medical books.' We were all in a state of shock. How could this be happening?"

In August 1997, after the diagnosis, Clare came back to the family home. Her family and boyfriend, Andrew, accepted she had come back to die . The months that followed were harrowing for all of them, especially Clare's sister Lisa. The two had been very close.

Mr Tomkins recalled: "Clare was to deteriorate badly. This wonderful girl, once so full of life, could not see, she could not hear, she had to be fed through a tube in her nose. All I could see was the fear in her eyes, the pain she must have been feeling."

Then fate dealt another cruel hand to the Tomkins. In September of that year Mrs Tomkins was found to be suffering from cancer . She had been distraught about Clare and Mr Tomkins is convinced that contributed to what happened.

"The doctors told me that her immune system had been badly affected by all the stress over Clare, that's when people are affected by predatory diseases - that's when cancer took her," he said in a quiet voice at his home in the Norfolk Broads.

"There was Clare in one room terminally ill and Dawn in another. I gave up my job, it was full-time work looking after both of them. I knew I had to be strong, but I am afraid at times I just broke down and cried . I felt so frustrated, so helpless, so desperate to do something, but not knowing what to do. But then I thought, am I just very selfish crying? Shouldn't I just get on. Everything seemed so confused."

Clare died in April 1998. "There was no drama, no suffering at the end. She just passed away peacefully in my arms. She just looked at me and drew her last breath. I went on looking after Dawn. She died two months later."

Life went on. Lisa had twochildren. Andrew now has a new partner. Mr Tomkins decided to move away from Kent to the Norfolk village where the family had happy and contented holidays. He bought a little sailing boat.

Then, in Norfolk, he met Sarah, a woman Dawn had got to know during the vacations. It turned out her husband had died of classical CJD, a disease related to Alzheimer's. They are now a couple. "I had gone to tell her about Dawn," he said. "We got on very well together. Sarah had given me a bit of comfort, bit of peace, we are happytogether."

Mr Tomkins missed the first few months of the Phillips inquiry while he was looking after Clare and Dawn. After that he became a regular visitor , taking notes, building up a compendium of documents , which now spills out of every corner of his study.

"I felt it was my duty to go to the inquiry as often as possible. We have been told that it was the family's inquiry, they were doing it for us," he said. "Some of the things we heard about the conduct of ministers and senior civil servants were pretty shocking . It was, of course, Conservative ministers who were in power at the time. But this is not a party political thing, the government of the day was responsible."

Only after attending the inquiry, Mr Tomkins said, did he realise just how important it was. "The fact it took place was immensely significant. What we have found out is that money was put before health . Hopefully, this will help prevent this ever happening again. People matter, life matters ."

23 Oct 00 - CJD - CJD victims' families to get compensation

By Colin Brown, Political Editor

Independent ... Monday 23 October 2000

Families of victims of vCJD, the human form of mad cow disease, will be offered a no-fault compensation package worth millions of pounds by the Government this week after the publication of the long-awaited report on the causes of BSE.

A trust will be set up for the families of victims of variant Creutzfeldt Jakob Disease and compensation will be made available for future victims of the disease, for which there is no known cure .

The Agriculture Minister, Nick Brown, and the Secretary of State for Health, Alan Milburn, who are said to have fought tenaciously for the deal, will also announce an enhanced care package for people believed to have the disease and who are still alive.

Such assistance is expected to ease complaints from groups such as the Human BSE Foundation, which speaks for victims' relatives, that families of sufferers who still alive receive inadequate health and social services support .

Ministerial sources said it would not stop victims' families from taking legal action for more compensation, but the ex gratia payments would demonstrate the Government's support for their plight.

The Government has decided to make a special case of the vCJD victims because of the compensation already offered to the beef industry totalling about £3bn. The victims' families can expect to get pay-outs running to five figures.

One minister said: "We have compensated the farmers and abattoirs who helped to cause BSE; we have to do something for the victims."

The decision, backed by Tony Blair, was made on moral grounds, regardless of whether an inquiry by Lord Phillips finds the Government liable for the crisis. Treasury officials are said to have opposed the move during months of debate in Whitehall because they feared it would open the government to unlimited liability.

A leaked Cabinet memo earlier this month that said ministers would fight compensation claims that were not backed up by proof of legal liability is reported to have sparked a furious row between ministers.

The report of the Phillips inquiry, to be published on Thursday, is not as harsh in its condemnation of the Tory ministers who were in power at the time of the BSE outbreak as many Labour supporters had hoped.

It criticises individual ministers - including John Gummer , John MacGregor , Douglas Hogg and Stephen Dorrell - for their reassurances that beef was safe , but it is unlikely to damage the current Tory leadership.

"You have to read between the lines to see who was to blame," said a minister. "It's very closely worded and it's a bit of a whitewash."

Former officials at the Ministry of Agriculture, Fisheries and Food are expected to bear the brunt of the criticism for the development of cattle feed that led to the disease, and failures to ensure that infected meat did not get into the food chain.

So far, 73 people have died from vCJD, which has been directly linked to eating beef infected with bovine spongiform encephalopathy. After initial fears that the number of victims could run into hundreds of thousands, current predictions stand at about 6,000 .

David Body, the solicitor representing the families, said the compensation scheme was "right and proper. Many people who have lost children or [other] members of their families have so far not received a penny ."

22 Oct 00 - CJD - Revealed: full scale of vaccine blunders

Martin Bright and Antony Barnett

Guardian ... Sunday 22 October 2000

US authorities horrified by conditions at factory in BSE-tainted polio drug scare

The drug factory at the centre of the polio vaccine scandal has a history of contamination and production blunders, leading to fears that its vaccines against other diseases are unsafe.

The lives of thousands of old people and children have been put at risk by drug shortages caused by a catalogue of problems that have plagued the Medeva vaccines plant on Merseyside. One serious incident led to British soldiers being sent abroad without protection against Yellow Fever.

Last year, investigators from the US Food and Drug Administration (FDA) were horrified by the conditions they found at the plant in Speke, near Liverpool, which also makes vaccines against flu, tuberculosis, tetanus and Hepatitis B.

On Friday, the Department of Health was forced to recall Medeva's oral polio vaccine after it was discovered that the firm had potentially been using BSE-infected material.

This weekend, an investigation by The Observer can reveal that the problems surrounding the polio vaccine may prove to be the tip of the iceberg .

A week-long inspection by the FDA last summer into the production of the flu vaccine Fluvirin at the plant found Medeva had failed to :

- maintain systems to prevent unacceptable levels of toxins and bacteria contaminating the production process;

- ensure batches of vaccines 'conformed with all established standards, specifications and characteristics' ; and

- prove that vaccines on doctors' shelves would be free from 'bacteria and fungi' .

Last October the FDA's director of compliance, Steven Masiello, fired off an official warning letter to Medeva's head of primary production, John O'Brian, telling him to sort out the problems or have its product banned from entering the US. Fluvirin is used by some 20 million Americans and more than a million British people, many of them elderly.

Although the extent of the excess levels of toxins and bacteria at the Speke factory is not known, in extreme cases, contaminated vaccines can lead to severe adverse reactions, including toxic shock and fever. In the old and fragile, the impact could be lethal.

The FDA letter, seen by The Observer , contains the disclosure that instead of dealing with the problems, managers at the plant wanted to raise the level of contamination deemed to be acceptable.

Sources familiar with the company's operations claim that there were serious production problems running through the factory and abuses were routinely ignored.

Although it is not known what other contamination problems the factory had, it is known that production difficulties were not confined solely to the manufacture of the flu vaccine.

The Observer has learned that the company was forced to stop making its Yellow Fever vaccine Arilvax, leading to a widespread shortage throughout the country. The Ministry of Defence last night confirmed that the situation became so serious that earlier this year it sent British soldiers on overseas missions without protection against Yellow Fever. Many travellers were also unable to get vaccinated against the horrifying tropical disease, which attacks the stomach and kidneys. The company has still not restarted production.

This March, The Observer revealed that production problems at the Medeva factory had led to warnings of a tuberculosis epidemic after the company failed to supply sufficient quantities of vaccine to health authorities. Three months after the FDA inspection the shortage of TB vaccines led to the suspension of routine school vaccinations .

Liberal Democrat consumer affairs spokesman Norman Baker is now calling for an immediate investigation into events at the Speke factory and a full explanation from the Department of Health.

He also said that the Medicines Control Agency (MCA), the body which regulates drug companies, had serious questions to answer about why it had failed to take any action.

Baker said: 'The Department of Health and the MCA have completely failed to act in the interests of public health.

'In their desperate attempts not to undermine the vaccination programme, they have tried to sweep all problems under the carpet. As a result, public confidence has been shattered.

'When will they learn that the answer is not to cover up, but to identify problems and deal with them immediately?'

The Medicines Control Agency refused to answer any questions posed by The Observer about Medeva's vaccines and production at the Merseyside factory.

A spokeswoman for the Department of Health said: 'The MCA would not have allowed vaccines to be produced at this factory unless it was sure it was safe.'

The troubled Speke plant has changed hands twice over the past year. When the problems were first identified by the FDA, it was owned by Medeva Pharma, which was bought by Celltech in January. Just last month, the vaccine business was sold on to Oxford-based Powderject and is now called Evans Vaccines.

A spokesman for Powderject said the company had first looked at buying the business last year, but pulled out after reading the FDA report . After receiving reassurances that the problems had been resolved it went ahead with the purchase: £56 million has been spent on improvements and the management team has been changed, although a number of senior personnel remain with the firm.

The FDA confirmed that it had not reinspected the plant since its October warning letter, but was satisfied that problems were now being dealt with. It has authorised the import of the flu vaccine this year.

A spokeswoman said: 'The FDA would not allow this vaccine to enter the country if it was not safe.'

22 Oct 00 - CJD - Experts knew of suspect polio jabs

Lois Rogers and Jonathan Leake

Sunday Times ... Sunday 22 October 2000

Government advisers have known for months that "old" polio vaccine was still in use, despite the fact it contravened safety guidelines, it emerged last night.

One of the three strains of polio vaccine used to immunise children until last week has been in deep-frozen storage since the mid-1980s .

It was produced from bacteria grown on serum from British cattle, which is forbidden by European guidelines for use in vaccine manufacture despite the fact that serum has never been shown to pass on BSE, or mad cow disease.

The committee on safety of medicines was alerted to this breach of the rules in August. A spokesman for the health department said the government's medicines control agency shortly afterwards launched an investigation, which was only completed earlier this month.

Although a health department vaccines expert said the safety of the polio vaccine could be virtually guaranteed, there are fewer assurances for other possible medical transmissions of variant CJD, the human form of BSE.

Last week it emerged that two hospitals where staff unwittingly operated on a patient incubating variant CJD have warned that hundreds of other patients may have been infected during subsequent operations using the same surgical instruments .

Prions, the infective agents thought to transmit variant CJD, have been shown to survive high-temperature sterilisation techniques used by both hospitals.

Bassetlaw district general hospital in Worksop, Nottinghamshire, and the Northern general hospital in Sheffield will examine records to see if those exposed can be traced.

At the time of the operations, in 1996, the patient showed no signs of variant CJD. She died this year at the age of 24.

An analysis of her appendix - removed at Bassetlaw in 1996 - showed high concentrations of prions. The cuts made to remove it would have exposed the instruments to the infective particles.

The instruments would then then have been distributed to other hospitals in the region after sterilisation. Hundreds of people could have been exposed to prions.

A spokesman at Bassetlaw said it would start an investigation. "We followed all the guidelines on sterilisation." The Northern general, where the woman had dental operations, will also hold an inquiry.

22 Oct 00 - CJD - Families of CJD victims will sue for millions

By Andrew Alderson, Chief Reporter

Telegraph ... Sunday 22 October 2000

Families of the victims of the human form of "mad cow" disease are to use the BSE inquiry report, due for publication this week, to launch a multi-million-pound compensation claim against the Government.

Lawyers acting for the families are convinced that the report will provide vital evidence of negligence and complacency on the part of senior ministers and civil servants in their handling of the bovine spongiform encephalopathy crisis.

David Body, the solicitor who represents 73 families affected, said that any legal action would be taken against the Department of Health and the Ministry of Agriculture, Fisheries and Food. He said: "The findings of the inquiry are terribly important to our claim. It will provide the factual grounds on which any subsequent litigation is based. Until now, it has been very hard to determine the objective facts."

The 16-volume report of the BSE inquiry chaired by Lord Phillips of Worth Matravers will be published on Thursday. Nick Brown, the Agriculture Minister, will make a statement to the House of Commons. One former minister who faces criticism is John Gummer, who publicly fed his four-year-old daughter, Cordelia, a beefburger in 1990 when he was the minister of agriculture to demonstrate confidence in beef.

There are 84 people in Britain believed to have contracted new variant Creutzfeldt-Jakob disease (vCJD), the human form of the disease; 77 have died. About half have child dependants . Predictions on how many people will contract vCJD vary enormously. Some believe that there will be just hundreds of cases; others fear that the toll may rise to hundreds of thousands .

David Churchill, whose son, Stephen, died aged 19 of vCJD in 1995, said: "Compensation is an increasingly important issue, particularly for those who have lost a breadwinner from a family or for a parent or spouse who now cannot work because of the toll of caring for a loved one."

Mr Churchill, a retired fire officer from Devizes, Wiltshire, added: "The constant irritation for the families is that the farming community was given no-fault compensation through an open chequebook while we have not even received a compensation offer."

Mr Body said it was impossible to predict how much compensation would be sought. The size of individual payments would depend on factors such as the age of the victim, his or her earnings and number of dependants, and the "pain, suffering and loss of amenity" .

Mr Body hopes that a settlement might be based on annual payments rather than a lump sum. He said: "There are those who still persist in the view that there is no proven link between BSE and new variant CJD. They tend to the view that there is no responsibility on any one. I think that there is a link and one that can be proved to the satisfaction of the court."

The Government may decide that "no fault" compensation - putting the blame on the Tory administration - is preferable to a drawn-out legal battle. Such an offer, however, could cost billions if the number of vCJD victims were to soar.

22 Oct 00 - CJD - Families of CJD victims will receive compensation

By Kim Sengupta

Independent ... Sunday 22 October 2000

As families of vCJD victims welcomed reports of imminent Government compensation, one of the officials likely to be criticised in Lord Phillips's report on the tainted-beef crisis defended his actions yesterday.

Sir Richard Packer, who was permanent secretary at the Ministry of Agriculture, Fisheries and Food from 1993 to 2000, said he had been sent draft criticisms relating to contingency planning in March 1996, but that he did not accept the criticisms. "I have gone into great detail with the inquiry as to why it's mistaken," he said.

David Body, the lawyer representing the families affected so far by the human form of mad cow disease, reacted positively to reports over the weekend that the Government would announce ex gratia compensation when the Phillips report is published on Thursday. Claims on behalf of the families of those who had died could fall within a range of around £75,000 to £250,000 , he said.

An even greater priority is securing proper care for those who are suspected to be suffering from the disease, and for future victims . At present, care is provided and funded locally. To ensure consistency of approach and standards, the families' legal team has pushed for a central fund.

The cabinet committee set up to deal with the Phillips report is said to have acknowledged that it would be " morally impossible" to reject claims of compensation and agreed to a no-fault scheme .

The long-awaited report is expected to be critical of more than 30 former Conservative ministers and senior civil servants over a catalogue of blunders . In what has been described as one of the most scathing indictments of a government department by an official report , it is expected to accuse the ministry of a "culture of secrecy" and a "bunker mentality," according to those who have seen the report.

It is also said to predict that the number of people suffering from variant Creutzfeldt Jakob Disease (vCJD), the human form of bovine spongiform encephalopathy (BSE), will increase to more than 100 next year. So far, 73 people have died from the disease.

Among those facing criticism are former ministers John Gummer , John MacGregor , David Maclean , Gillian Shephard and Douglas Hogg . Also in the firing line, it is believed, are Keith Meldrum , the ministry's chief veterinary officer between 1988 and 1997, and Howard Rees , Mr Meldrum's predecessor from 1980 to 1988.

Mr Hogg , who was agriculture minister when the crisis erupted in 1996, has blamed former prime minister John Major and his cabinet colleagues for not taking his warnings about BSE. The Government ignored his advise for strong action, he said, to adopt a weaker set of proposals advocated by his ministry.

Lord Phillips's inquiry, set up after Labour came to power in 1997, is not expected to make specific recommendations for Government action, nor findings of legal liability.

22 Oct 00 - CJD - BSE victims to get millions

Sunday October 22, 2000

Guardian ... Sunday 22 October 2000

The Government has agreed a multi-million-pound compensation package for sufferers of the human form of BSE, or mad cow disease, after agreeing it would be 'morally impossible' to turn them down , The Observer can reveal.

The deal, which will delight the 84 families whose lives have been blighted by the disease, is set to be announced on Thursday, along with the publication of Lord Phillips's long-awaited report on the BSE crisis that has stalked Britain since the Eighties.

Senior Whitehall sources said that, although there were still practical and legal difficulties that needed to be overcome, the Cabinet committee set up to deal with the Phillips report has agreed a no-fault scheme that will pay families hundreds of thousands of pounds .

The source made it clear it was being seen as moral issue whether Lord Phillips says the Government is directly liable for the BSE disaster. Tony Blair, the Prime Minister, is said to have put his weight behind the compensation scheme.

So far 73 people have died from new variant Creutzfeldt Jakob Disease (nvCJD), which has been directly linked to eating beef infected with BSE. Another 11 people are thought to be suffering from the disease.

David Body, the solicitor representing victims' families, welcomed the news.

'We will have to wait and see the details, but if the Government is to establish a no-fault compensation scheme then it would be doing what is right and proper. Farmers have been compensated, the meat industry has been compensated, but many people who have lost children or members of their families have so far not received a penny .'

Billy McIntyre of Aberdeen, whose 21-year-old daughter Donna is dying of new variant CJD, said: 'It would be brilliant news and help us out incredibly. A government was to blame and this one should support us.'

The Government has been grappling with the compensation issue for months. Nick Brown, the Agriculture Minister, and Alan Milburn, the Health Secretary, have been set against Treasury officials concerned that payments will set a precedent that could expose the Government to unlimited liability .

'Nick and Alan have been fighting like tigers for this,' the Whitehall source said.

Although there were initial fears that the number of people who might contract new variant CJD from eating infected beef would run into six figures, recent studies suggest the figure could be as low as 6,000.

Even so, government officials were initially reluctant to offer compensation. Earlier this month there was a furious row after a leaked Whitehall memo suggested Ministers would fight any compensation claims.

The Cabinet memo stated 'that there will be no payment of compensation without proof of legal liability.'

It also said: 'There will be considerable pressure on the Government to accept the inquiry findings and apportion blame... but to do so would be to risk incurring unforeseeably large expenditure, depending on the scale of human disease, for which there would otherwise be no legal grounds.'

But with victims' families ready to go to court, the Prime Minister was advised of the huge political damage a lengthy court case would do .

Clare Callaghan from Belfast, whose 30-year-old husband Maurice died from new variant CJD in 1995, has been struggling to bring up two children by herself.

She said: 'It would be wonderful news if there was compensation without us having to go through court and bring back the tragedy again. We have been surviving on my husband's pensions but it has been very difficult.'

The Human BSE Foundation which speaks for victims' families has been calling for compensation to include a care package to help relatives look after those suffering from new variant CJD. There have been widespread complaints of inadequate health and social services support.

The BSE report will criticise former Tory Agriculture Ministers John Gummer , John MacGregor and Douglas Hogg .

22 Oct 00 - CJD - BSE report names 30 guilty men

Jonathan Leake and Michael Prescott

Sunday Times ... Sunday 22 October 2000

The long-awaited BSE inquiry report, to be published on Thursday, will criticise more than 30 former Conservative ministers and civil servants for a catalogue of failures that allowed "mad cow" disease to devastate British agriculture and infect humans.

The government has agreed a multi-million-pound compensation package for sufferers of the human form of the disease . The scheme will pay hundreds of thousands of pounds to the 85 families with victims of CJD.

The report of the inquiry is scathing about the quality and competence of many of those in charge of the Ministry of Agriculture, Fisheries and Food (Maff) from the mid-1980s to 1996. Some Whitehall insiders have described it as the most powerful indictment of a ministry that they have ever seen.

Government officials are to be accused of a "culture of secrecy" and a "bunker mentality" , according to insiders who have read the report. It coincides with official predictions that the number of people to contract variant CJD, the human form of BSE, will reach 100 early next year. It has already killed at least 74 , with another 11 fatally ill.

One of the most serious findings is that between 1985 and 1988, when BSE was recognised, officials and senior government vets ordered junior scientists to rewrite scientific papers to exclude any suggestion that BSE was related to scrapie .

They feared that any implication that scrapie, the brain disease which affects sheep, could jump the species barrier would destroy the beef industry . The real priority - human health - was ignored , says the report.

The 16-volume report calls for an overhaul of the way governments tackle health risks. The setting up of advisory committees is flawed . Instead, it says, ministers must operate on "the precautionary principle" , where they issue public warnings before scientists have given a judgment.

The government is expected to respond to the report by the further restructuring of the health and agriculture ministries. It has already stripped Maff of responsibility for food safety by setting up the Food Standards Agency.

Keith Meldrum , Maff's chief veterinary officer from 1988 to 1997, is said to face 35 separate criticisms . They include failing to ensure that abattoirs kept banned materials such as bovine brains, spines and offal out of the human food chain.

Howard Rees, his predecessor who was in office from 1980-88, is said to have been partly responsible for the delay in making public the possible link between BSE and scrapie.

This weekend former ministers such as John Gummer , agriculture secretary from 1989 to 1993, and John MacGregor , in the post from 1987-89, were bracing themselves for the report's publication.

Gummer notoriously posed for photographers while feeding his daughter a beefburger to demonstrate that beef was safe. An inquiry insider says the report finds his judgment "proved quite simply to be wrong".

MacGregor is criticised for his decision to give farmers only half the market value in compensation for any cow hit by BSE. This, the report says, meant tens of thousands of infected animals entered the food chain because farmers refused to admit they were ill.

MacGregor and Gummer are also rebuked for their inability to respond quickly to scientific evidence of the crisis. One example was Gummer's response to the discovery that a cat had died from CJD. He waited another three months for tests to establish whether pigs could also be infected.

Other former agriculture ministers facing criticism are David Maclean and Gillian Shephard .

Douglas Hogg , agriculture minister when it was announced that CJD had spread to humans, is both praised and criticised. His attempt to prevent infected cattle from entering the food chain was blocked by cabinet colleagues.

----------------

Frances Carrefour supermarket chain last night removed French beef from its shelves over fears that it may have been contaminated with BSE. The French agricultural ministry said a tonne of beef from a contaminated herd had been sold to the store group. Two more tonnes of meat from the same herd was intercepted at the abattoir.